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ocular melanoma

Move for Melanoma 2023

Move for Melanoma is an activity challenge that takes place across Canada. The goal of the event is to bring awareness to melanoma, non-melanoma skin cancer and ocular melanoma, while raising funds to support patients affected with these diseases when they need it most.

This year, the event will take place on September 22-24th, 2023. As always, participants will be able to choose a physical challenge of their choice to complete on the weekend of the event. Participants will form teams and, together with their friends and family, try to reach their personal fundraising goals.

To facilitate the whole thing, again this year, we will be using a custom website that allows people to register, donate, solicit donations, track progress and promote the event all in one place. The website also includes many resources for participants to help them get ready, and a Q&A page for more information.

If you’re interested in joining us, please visit Move for Melanoma 2023 and register now.

 

Save Your Skin Foundation is the only organization in Canada that supports skin cancer patients financially when they need it most. All the money raised through your donations goes directly to patients in the form of cab fares, treatment costs, flights, accommodation and other necessary but costly expenses incurred while receiving treatment.

Whether you’re a survivor who wants to bring hope to newly diagnosed patients, the family member or friend of a patient who wants to send a powerful message of solidarity, or a patient who wants to help change the face of cancer for ever, we invite you to take a stand against melanoma and to move with us this September!

Hand in hand, we fight melanoma together!

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Monthly Patient Fireside Chat – Nurturing Wellness and Self-Care in Cancer Patients, Caregivers & Survivors

 

JULY TOPIC

Nurturing Wellness and Self-Care in Cancer Patients, Caregivers & Survivors

Join us for our upcoming July Fireside Chat, where we will be focusing on an important topic that often goes unnoticed – the wellness and self-care of patients, caregivers, and survivors who have faced melanoma, non-melanoma, skin cancers, and Ocular/uveal melanoma in the past.

Amidst the recent discussions in oncology and Survivor Day, we believe it’s essential to take a moment to pause, breathe, and check in on everyone’s overall well-being. Our Fireside Chat will provide a safe and supportive environment for open conversations about wellness, self-care, sharing experiences, and exploring strategies for support.

Whether you have personally battled cancer or have been a caregiver or survivor, we invite you to join us for this meaningful discussion. It’s crucial to acknowledge the emotional impact that cancer can have and provide resources and support for maintaining overall well-being throughout the journey.

Together, let’s create a space where we can listen, empathize, and learn from one another. Mark your calendars and join us for this July Fireside Chat dedicated to nurturing wellness and self-care in those affected by various forms of cancer.

REGISTER TODAY!

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Monthly Patient Fireside Chats – Survivorship

5pm – 6:30pm PT | 8pm – 9:30pm ET

This year, we’re taking our monthly patient support chats in a new direction!

What’s new?

Our monthly chats are attended by a small standing group of core hosts, including SYSF Founder Kathy Barnard and fellow survivors, who take turns leading the group in a themed topic each month, allowing plenty of time for questions and discussion.

This month’s theme:

This month we’ll be celebrating survivorship and sharing stories of triumph. During this Fireside Chat we’re talking about celebrating cancer survivorship in honour of National Cancer Survivors Day in June with host Rob Stauffer who’s a melanoma survivor from Alberta, Canada.
Come learn and share with other patients and caregivers.
This month’s host:

Rob Stauffer, melanoma survivor, AB

Register Now

 

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Virtual Trivia Night

4pm – 5:30pm PT | 7pm – 8:30pm ET

As part of Melanoma and Skin Cancer Awareness Month, we’re hosting a Virtual Trivia Night to celebrate and bring together patients, caregivers, health care providers, and advocates.

This event is an opportunity for us to come together, have some fun, and celebrate our shared dedication to the fight against skin cancer, melanoma, and ocular melanoma. It’s a chance to connect with others in the community, put your knowledge to the test, and win some great prizes.

Register as an individual. We will assign the teams, but will keep family/friends together as much as possible. Single players welcome! Tickets are $10 per person.

Prizes will be awarded to the top teams!

Register here 

The Trivia Night will take place virtually on Zoom. It will be hosted by SYSF staff and will include 8 rounds on different topics and will require participation from each registrant. The host will ask questions to each team alternately and teams will be given a bit of time to discuss before submitting their final answer.

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Ocular Melanoma Patient & Caregiver Symposium

Thank you so much to all who attended the FIRST Canadian Ocular Melanoma Patient & Caregiver Symposium!

If you weren’t able to join us live over the weekend, you can watch the recording of the symposium on our Youtube channel.

Date: 
April 15 & 16, 2023

Start Time:
Day 1 – Starts: 12pm EST | 9am PST | 10am MST | 1:30pm NST | 1pm AST

The Symposium is brought to you by Ocumel Canada & will consist of 4 key presenters. This symposium will go over 7 virtual sessions over 2 days and will provide up-todate information on primary and metastatic disease, treatment options, testing, and the psychosocial experience of patients. Patients living with primary and metastatic ocular melanoma will also share their experiences.

Can’t attend that weekend? Register anyway and the recordings will be sent to you as soon as they are available.

Our Key Presenters:

  • Dr. Marcus Butler, Medical Oncologist, Princess Margaret Cancer Centre
  • Dr. Hatem Krema, Director, Ocular Oncology, Princess Margaret Cancer Centre/UHN
  • Dr. Ezekiel Weis, Provincial Medical Lead, Alberta Ocular Brachytherapy Program
  • Monica Tan, Social Worker, Telus Health/ Private Practice

PROGRAM & ADDITIONAL INFORMATION

Program

Start: 12pm EST | 9am PST | 10am MST | 1:30pm NST | 1pm AST

  • Welcome – Nigel Deacon and Kathy Barnard (15 min)
  • Session 1 – Patient Story – Sherry Agriesti (20 min)
  • Session 2 – Presentation: Primary disease – Dr. Weis (45 min)
  • Break (5 min)
  • Session 3 – Patient Story – Mark Jennings (20 min)
    Dr. Krema – Presentation on the value of testing for patients and physicians in making treatment decisions (45 min) followed by a 15 min Q&A
    Castle (Dr. Alsina) and Impact Genetics (Jamie Jessens) –  Presentation on testing (value and availability) and discussion around testing tools – (30 min)

End: 3pm EST | 12pm PST | 1pm MST | 4:30pm NST | 4pm AST

DAY 2

Start: 12pm EST | 9am PST | 10am MST | 1:30pm NST | 1pm AST

  • Welcome – Nigel Deacon and Kathy Barnard (5 min)
  • Session 1 – Patient Story – Candyce Charles (20 min)
  • Session 2 – Presentation on metastatic disease – Dr. Butler (45 min)
  • Break (5 min)
  • Session 3 – Presentation: Psychosocial Experience of the Patient (30 min) followed by a question period (20 mins)
  • Session 4 – Discussion: What Patients and Caregivers Need from Ocumel Canada Moving Forward – What Needs are Not Being Addressed – Nigel Deacon and Kathy Barnard (30 min)
  • Closing – Nigel Deacon and Kathy Barnard (5 min)

End: 3pm EST | 12pm PST | 1pm MST | 4:30pm NST | 4pm AST

Ocumel Canada, an initiative of Save Your Skin Foundation, was formed to increase awareness, advance treatment options, and build a supportive community for those diagnosed with primary and/or metastatic ocular melanoma (OM). Ocumel Canada is in close collaboration with a global Medical Advisory Board and partner patient representation organizations with the endeavour to build on international best practices to improve patient outcomes for Canadians touched by this disease.

This rare cancer is a challenge in so many ways. The small number of diagnoses in Canada does make it difficult for the mainstream Cancer Agencies to provide adequate services. In some provinces and territories, there are no services at all.

Click here to learn more

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Patient Reported Experience Measures: 2022 Highlights!

In 2022, Save Your Skin Foundation ran three major patient surveys in order to collect patient-reported experience measure data (PREMs): 

  • “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma” (April/May)
  •  “The Patient Experience: Treatment of Patients with Ocular Melanoma” (April/May)
  • “Patient Survey: Treatment Plan Decision-Making” (September/October)

Long-form reporting of the data for “The Patient Experience: Treatment of Patients with Ocular Melanoma” and “Patient Survey: Treatment Plan Decision-Making” are available on the Save Your Skin website. “Treatment Plan Decision-Making” was available in both English and French, and was developed in partnership with AIM at Melanoma. The following blog highlights some particularly notable outcomes from these surveys; we hope you find something of interest to you!

 

Highlights from “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma”
  • When asked if they would consider it reasonable to receive additional treatments should their melanoma recur at a later stage, 78.26% directly indicated that they would be interested in additional treatments (Q12).
  • When asked specifically about their experiences on Pembrolizumab (Keytruda™), 73.68% reported enduring fatigue as a side effect, followed in frequency of votes by skin rashes (36.84%) and cognitive impairment (26.32%) (Q17). 61.11% found these side effects manageable (Q18).
  • 95.45% of participants indicated that the side effects resulting from this therapy were worth it for the benefits of the treatment (Q19).
  • When asked if they would consider receiving drug therapy from a clinical trial, 77.27% responded that they would, should the need arise. Of the 22.73% that responded “not sure,” several added comments indicating that they would consider it, but would need more information (Q22).

 

Highlights from “The Patient Experience: Treatment of Patients with Ocular Melanoma”
  • 63.63% of our ocular melanoma survey participant pool who have not received genetic testing would like to, suggesting that many patients see this as a worthwhile process (Question 11).
  • Unsurprisingly, eye-related side effects are the most common for patients with ocular melanoma. These include loss of vision (64.51% of responses), eye pain (16.12%), cataracts (9.67%), flashes of light in the eyes (12.9%), dry eyes (3.22%), macular edema (3.22%), and retinopathy (3.22%) (Q16).
  • 82.35% of participants have ongoing follow up appointments/testing every 3-6 months (Q20).
  • 79.31% of responses suggested that if their disease were to progress in the future, they would be interested in receiving additional treatments (Q21).
  • 64.71% of survey participants indicated that if they were offered enrolment in a clinical trial, they would take it (Q24).
  • The most frequently cited side effects by participants receiving KIMMTRAK ® (tebentafusp-tebn) for their ocular melanoma were fatigue and skin rashes (both selected by 50% of participants) (Q28).
  • 100% of patients who received KIMMTRAK ® (tebentafusp-tebn) noted that the side effects of this treatment were worth enduring for the survival benefit (Q30)
  • The most frequently cited barrier to accessing KIMMTRAK ® (tebentafusp-tebn) was having to travel to another city, which was both an inconvenience and a financial hardship (Q31).

 

Highlights from “Patient Survey: Treatment Plan Decision-Making” English language survey
  • When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “prognosis” as their primary concern, followed by “treatment timeline” and then “care plan.” That “quality of life” and “financial considerations” are the lowest priorities suggests that patients care about survival above all else (Q7).
  • Questions nine and ten demonstrated that patients are creating a treatment plan with their healthcare team along their ideal timeline, which is either at the time of diagnosis or between their first and third appointments.
  • The majority of survey participants (76.56%) stated that they understood at least “most” of the cancer-related information provided to them (Q12); however, 32.82% expressed dissatisfaction with the amount and quality of the information they received (Q21).
  • When asked what resource they most frequently turn to for cancer-related information (other than their healthcare team), the internet was cited by 82.54% of participants (Q13)
  • Questions 15 and 16 illustrated that 73.44% of participants feel they had an appropriate amount of input in developing their treatment plan. 
  • When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” patients ranked “long-term survival” as their highest priority (Q17).
  • When asked to indicate the two most significant challenges they experienced during treatment, the need for emotional support (60.94%) and the impact of physiological symptoms (45.31%) had the highest number of votes (Q27).

 

Highlights from “Patient Survey: Treatment Plan Decision-Making” French language survey
  • When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “care plan” as their primary concern, followed by “prognosis” and then “quality of life” (Q7).
  • Like the English language cohort, the French language survey participants received care plans along their ideal timeline of either at the time of diagnosis or between the first and third appointments (Q9, 10).
  • In the French language survey, a greater percentage of participants indicated having more responsibility for the development of their care plans. Only 27.27% felt “appropriately involved,” while 63.63% indicated that they made the decision more independently (Q15).
  • When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” the French language patients also ranked “long-term survival” as their highest priority (Q17).
  • When asked whether they felt prepared for treatment, participants had polarised responses; 63.64% reported feeling “entirely prepared for treatment,” while 27.27% were “mostly unprepared for treatment” (Q24).
  • When asked to indicate the two most significant challenges they experienced during treatment, the French language survey participants voted most frequently for physiological symptoms (54.55%), followed by emotional support and a lack of information, which were tied for votes (36.36% each). This suggests that the need for emotional support is more satisfied for the French language survey participants (Q27).

 

The data from patient reported experience measures, sampled above, is instrumental to our operations as a patient group. We consider these reports when we are prioritizing our initiatives for the new year, preparing our strategic plans for patient support, education, awareness, health policy, and advocacy, and share them with other stakeholders in the cancer space. We hope this information was valuable to you, and that the new year brings you joy, prosperity, and good health.

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November is Ocular Melanoma Awareness Month

November is Ocular Melanoma Awareness month – and it is the time of year we at Save Your Skin Foundation and Ocumel Canada bring extra public awareness to the importance of dilated eye exams for the detection of ocular melanoma.

Through our work, we will continue the conversation and maintain the #EyeGetDilated campaign beyond November, so that all Canadians can learn about their options for head to toe body health and to include eye checks in their list of doctor exams.

Early detection is incredibly important for many eye diseases, including ocular melanoma. Ocular melanoma is rare, affecting approximately five in a million people. About 200 cases are diagnosed per year in Canada. While it represents only 5% of melanomas, ocular melanoma can be rapid and aggressive, accounting for 9% of melanoma deaths. Also referred to as uveal melanoma, ocular is a more inclusive term; 90% of primary ocular melanoma develops in the choroid.

To read more about the importance of annual dilated eye exams, click on Brianne’s story below:

We are proud to have partnered with the groups BC Doctors of Optometry and Alberta Association of Optometrists!

 

 

 

 

 

 

For more information about Ocumel Canada and the work we do, visit any of the following pages:

OcumelCanada.ca

About Ocular Melanoma

Helpful Links

Resources and Support

If you or someone you know has been diagnosed with primary or metastatic ocular melanoma, connect with our community of support, Canadian bilingual Facebook group:  Ocular Melanoma Connect/Connexion mélanome oculaire 

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Move for Melanoma 2022 – It’s a Wrap

A tremendous THANK YOU to all of our incredibly dedicated participants and generous donors!

74 participants and 20 teams across Canada took part in Move for Melanoma this year! We have been so moved and inspired by this incredible community of patients, families, and friends.

After the success of last year, we once again set ourselves an ambitious goal of raising $75,000. With your help, we ended up surpassing our goal once again this year!


To wrap up this monumental weekend, we’ve created the Recap Video below. We hope you will take a few moments to watch it as we pay tribute to our incredible participants, donors and sponsors across Canada.


We’d also like to highlight the three fundraising teams that raised the most this year.

Team Ocumel Canada

Based in Victoria, BC, Team Captain Nigel Deacon ran a marathon distance to inspire others to donate to this worthy cause. Together with his fellow team members Martin Dawes and Linda Sendall, they raised an incredible $11,760 for ocular melanoma patients.

Check out his team page here.

 


Team Ani’s Keepers

Based in Chilliwack, BC, Ani Davidson and her sisters challenged themselves to complete a combined 10,000 minutes of fitness between them in the month of September – and they crushed that goal, completing 11,820 minutes! Ani is currently undergoing treatment for melanoma.

Check out her team page here.


Team Mela-No-More – In Honour of Laura

Based in Vancouver, BC, Team Mela-No-More raised funds in honour of Laura, whom they lost after a long and courageous fight. Laura was a beautiful and strong woman, wife and mother. The team raised almost $5,370

Check out their team page here.


Finally, we’d like to acknowledge the many businesses that stepped up to support our event this year. Please show them your support!

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Upcoming Webinar: Prognostic Testing and What It Means to Ocular Melanoma Patients

Join us for a free webinar on Wednesday, September 14 at 5pm PST | 8pm EST.

In this webinar, Katherina Alsina, PhD, Castle BioSciences, Dr. Ezekiel Weis, Provincial Medical Lead, Alberta Ocular Brachytherapy Program, and Dr. Marcus Butler, Medical Oncologist, Princess Margaret Cancer Centre, will help patients understand prognostic testing when diagnosed with Ocular Melanoma. They will also discuss options for HCPs for prognostic testing, what it can mean to patients and how it can affect treatment decisions. The presentations will be followed by a live Q&A session.
Click here to register
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Move for Melanoma 2022

Move for Melanoma is an activity challenge that takes place across Canada. The goal of the event is to bring awareness to melanoma, non-melanoma skin cancer and ocular melanoma, while raising funds to support patients affected with these diseases when they need it most.

This year, the event will take place on September 23-25th, 2022. As always, participants will be able to choose a physical challenge of their choice to complete on the weekend of the event. Participants will form teams and, together with their friends and family, try to reach their personal fundraising goals.

To facilitate the whole thing, again this year, we will be using a custom website that allows people to register, donate, solicit donations, track progress and promote the event all in one place. The website also includes many resources for participants to help them get ready, and a Q&A page for more information.

If you’re interested in joining us, please visit Move for Melanoma 2022 and register now.

 

Save Your Skin Foundation is the only organization in Canada that supports skin cancer patients financially when they need it most. All the money raised through your donations goes directly to patients in the form of cab fares, treatment costs, flights, accommodation and other necessary but costly expenses incurred while receiving treatment.

Whether you’re a survivor who wants to bring hope to newly diagnosed patients, the family member or friend of a patient who wants to send a powerful message of solidarity, or a patient who wants to help change the face of cancer for ever, we invite you to take a stand against melanoma and to move with us this September!

Hand in hand, we fight melanoma together!

          

Read more